Monday, December 7, 2015

Cytoxan Round Two vs. The Hulk - Health Upodate

Round 2 of 12 
Two weeks ago I received my second round of Cytoxan. (Wow, two weeks since an update!? Oops!) The infusion went well, and the dosage was upped by an extra 250mg. This round brought more nausea, and some extra fatigue, which my team was expecting since we are increasing the dose each time. There was one issue during the infusion, and that was a mix up with the medication (Mesna) that is used to protect my bladder from the harsh side effects of chemotherapy. Apparently the orders expressed that I was to pick up the dosing of Mesna, in oral form at my local pharmacy, instead of receiving it intravenously during my infusion like last time. (Which is still unclear if that was actually the case of just what the hospital told me.) This of course turned out to be inaccurate, but I had no way of knowing since I am unfamiliar with the medication. I quickly called my physician's office once I was informed by my pharmacy that no one carries the drug outside of the hospital. They were extremely surprised that the hospital did not provide me with the Mesna. After some phone tag with different hospitals, and my physician's office, it was decided that there was nothing they could do (which was NOT okay) since the time window to receive the drug to reach efficiency had passed. So basically, due to a screw up, my bladder was left unprotected from this round. I am absolutely following up on this oversight with my physician's office and the hospital where I received my Cytoxan. I will not let something like this happen again.The few days following Cytoxan were filled with nausea, a constant dosing of Zofran, and resting on the couch watching movies. Thankfully the effects only last about 4 days till I begin to feel human again.

Last week I had two appointments, one with my Autonomic Nervous System Specialist (Neurologist), and one was with my Gastroenterologist. The appointment with my ANS Physician was to review the results of my Tilt Table Test. In one of my last posts I had expressed that the results showed I had a form of Dysautonomia called POTS. (Postural Orthostatic Tachycardia Syndrome) While this information was accurate, my specialist informed me that my results actually indicated that I have a specific form of POTS known as Hyperadrenergic POTS. This is an uncommon form in which the body does not correctly regulate blood norepinephrine levels, leaving them extremely high. Norepinephrine is also known as "the stress hormone;" it is the bods y'"fight" response hallmarked by a thudding heart beat, tachycardia, heavy breathing, increased sweating, and a state of anxiety. Essentially with too high levels of this hormone, you are an adrenaline pumped mess at all times, leaving your body in tremors until you lose consciousness from sheer overload. It is pretty miserable. I imagine it's what the Hulk feels like! lol ;) Good news is, it is highly treatable with medications that block norepinephrine. My doctor placed me on a drug called Propranolol which has already successfully lowered my resting heart rate (yes I said resting!) from 110bpm to 78bpm! I cannot tell you how good it feels to not have my heart exploding out of my chest! The other useful treatment is the use of salt tabs and saline, which we began when we first suspected POTS many months ago. My Saline infusions will be upped from once a week, to twice a week since we now have a firm diagnosis. Even more exciting though is that these saline infusions will now be at home! Due to some confusion between the ordering physician and the local hospital I receive my fluids at I was able to secure a prescription for home infusions instead of trekking to the hospital twice a week on top of all my other appointments. This means a nurse will come to my house twice a week to access my port and run fluids from the comfort of my own couch. Awesome right!?

So many tubes! Mmmm Saline!
The appointment with my GI was basically just to check in, reevaluate my medications, and of course get a big hug because she is my favorite! My GI has always been my most bothersome system however; with the progression of my other organs, the GI tract has been relatively quiet for a change. My GERD and SIBO are both well under control on my current medications which is seriously a miracle! Finally, after a two years of messing with medications my system seems to have found a sweet spot. This doesn't mean that my organs are magically cured and I can eat meals again; it just means that we finally have found the right cocktail of meds to prevent me from barfing while simultaneously crapping my pants. Score! 
In all seriousness though, I am very happy with my digestive tract right now. It has been so nice to me lately I have even been able to have some small holiday snacks like Hot Cocoa without a violent reaction! (Give it sometimes it doesn't go well, but I have had a few successful cups!)  Hopefully this will continue through the Christmas season!

1 comment:

  1. First off, congratulations ongetting some relief from your tummy :) How awesome to drink some hot coco. It's been a long time it sounds like. I hope you're able to enjoy the holidays. You can only do so much at one time. Those of us that like to follow your blog are also pretty overwhelmed this time of year in our own way. Sorry to hear about that huge mess up with your bladder medication. If we don't hear from you till next year. Happy Hanukkah and Merry Christmas :)